Topic: ANGRY,CONFUSED AND VERY SAD!!!

Hello Everyone,

My girlfriend  just got diagnosed with Cholangiocarcinoma on 9/20/12.She is 54 years old.We are in the process of going to the City Of Hope with Dr. Singh for a second opinion,her actual Dr is Dr  Lowe with Cancer Care Associates in Redondo Beach Ca.Has anybody been under any of this two doctors care?She starts her first Chemo session on 10/8/12 .I am very angry that this is happening to such a wonderful and caring person and confused with all the  people involved in her care and very sad to see her going through this very hard time in our lifes.We have all the love and support from so many people at work and family members.Please help with advice.

Re: ANGRY,CONFUSED AND VERY SAD!!!

Welcome to our site.  (The one no one wants to belong to.)  You are in the right place.  The diagnoses of this disease bring out all human emotions including those you are voicing.   Therefore, dear graynosa,  know that we hear you, relate to you, and understand the feelings of dismay you are experiencing.  Please know thought that your girlfriend has much to be hopeful for, as within the last few years treatment options for this cancer have increased significantly.  In fact, it is my personal believe that in some instances it could be considered a chronic disease.   
I suppose that a liver transplantation and resection have been ruled out. 
Your quest for a second, professional, opinion is a good choice.  I would however; like to mention USC, as their biliary team treats a relatively high volume of Cholangiocarcinoma patients.
Please know that you are surrounded by loving, caring, people who offer freely to you (and anyone) the knowledge of their very own experience with this disease. 
Hugs,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: ANGRY,CONFUSED AND VERY SAD!!!

Dear greynosa, welcome to our extraordinary family but sorry you had to find us.
While City of Hope is a good place for Cancer Treatment I am not so sure they treat many with CC and you really want to go to a Hospital where they treat more CC patients. As Marion said, USC is known for treatment of CC. Anger is putting it mildly. There are so many emotions involved but I promise that when a game plan is in place the fright turns to fight. Can you tell us a little more about her Diagnosis like where is the CC located and what they found. I also suggest that you read up as much as you can on CC as knowledge is the power we fight this with. You have come to the right place to vent or ask advise, you are not alone, we are all here for you!

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: ANGRY,CONFUSED AND VERY SAD!!!

Dear greynosa, Welcome and sorry you had to find us. I am a CC survivor, 3 years cancer free!! I have an amazing story to share and you can read it at www.catherinedunnagan.com under the telegraph link. There is HOPE, I was 52 when diagnosed. Like every one with this cancer I was STUNNED, other cancers you are always looking for, not that the words "you have cancer" would be any less painful, but who knew we had a bile duct and it could be cancerous! 
The most important advice is make sure you have  a great CC doctor, our cancer is so rare that you need a doctor and cancer center who is aware of all the treatments and trials. I am alive because of God, 2 strangers and Dr. William Chapman at Barnes-Jewish Hopsital, St. Louis MO. I would not be here if Dr. Chapman didn't believe in transplants and help develop there protocol!!
I look forward to hearing more of your story, and please ask any question, you will get so much info and life expierences here.
Lots of prayers and HOPE-Cathy

Re: ANGRY,CONFUSED AND VERY SAD!!!

First of all, thank you for your quick replies.And please bare with me since this is all very new to me and don't know much about cc.But I have been reading quite a bit about cc and that's how I found you wonderful people.I will continue to keep you informed on her(Ginger is her name) as with fight this terrible desease together.We work for a private k-12 school in Southern Ca.She just got laid off in June 2012.She was in the food service for 22 years and I am the ground supervisor 12 years.So that means no more insurance for her since we are not married,but we do plan on getting married soon.When one of the parents found out about her cc,he volunteered to pay for her Cobra insurance for six months.We have so much support from students,faculty and staff and parents that it's just amazing and overwhelming to us both.I must say that Ginger is very strong and I just don't know where she gets it from.I am just so grateful for everybody and the cc foundation for all the support.Thank you once again and I will continue to keep you all informed on Gingers condition.God Bless You All.

Re: ANGRY,CONFUSED AND VERY SAD!!!

Dear greynosa, thank you for telling us a little more. I liked the story about the parent who came forward to pay the Cobra. Just when you start to loose a little faith in some people someone steps up to the plate and really delivers! Good story.
Can you tell us where the CC is located and what the doctors said about her prognosis, like is it contained? If you can we would like to know a little more about what the Doctors found.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: ANGRY,CONFUSED AND VERY SAD!!!

Dear greynosa:

I am so very sorry to hear of your girlfriend's diagnosis. I am glad you have found your way to this site. For both myself as someone fighting this cancer, and my wife as my partner and caretaker, the folk on this board have been a wonderful source of encouragement and support. More than that, advice that we received here about second (and third) opinions changed our lives for the better!

In that vein, along with Marion and Lainy I want to encourage you to look into USC. I know Dr. Singh used to be at USC, and he may be a good source for a second surgical opinion. However, I'd look to USC, not only for another opinion, but as a possible place your girlfriend might want to end up receiving ongoing treatment. In all the areas of surgery, oncology, interventional radiology, and so forth, they have multiple physicians who know this disease and treat it everyday. They have a reputation for being creative and up-to-date on the latest research and treatments. We have received excellent care there.

You both will be in our thoughts and prayers as you move through this difficult time. Do remember, though, there is hope. I am a living testimonial to the fact that you can have good quality of life after this diagnosis, even in my case of having late stage disease.

Mark

8 (edited by PCL1029 Thu, 27 Sep 2012 21:57:38)

Re: ANGRY,CONFUSED AND VERY SAD!!!

Hi,
I am a patient of this disease for 39 months, so I think my suggestion may be of interest to you.

1. Go to the social security office near you and apply disability benefit for your girlfriend. You will get disability financial help since your girl friend had worked 22 years . But the most important benefit of all is that, your girl friend will get the Medicare benefit in 18 month from the date of CC diagnosis rather than at the age of 65.
2. If I were you, I will go to USC now , get the second opinions on surgery, radiation and oncology there and start the treatment there rather than The City of Hope ,especially your financial means is limited. see a liver specialist ( surgeon) first , then follow his suggestion to see the next specialist, radiation or oncology.
Surgery provides the ONLY possible cure for this disease. Don't waste money on other healthcare institutions if money is of concern. Remember, not all the healthcare institutions are equal of quality esp. for this cancer. And Please forgive me if My wordings above is too strong because I am only a simple man and not good at fine expression. But I care about your situation.
God bless.

Please know that my personal opinion is not intended nor implied to be a substitute for professional medical advice. If  provided, information are for educational purposes.Consult doctor is a MUST for changing of treatment plans.

Re: ANGRY,CONFUSED AND VERY SAD!!!

Hello and welcome,

Sorry you are going through this with your girlfriend. This is a wonderful group of people that treat and care about you like family. Once you find a medical facility that you feel comfortable with things will start to fall into place. A new diagnosis can make you feel lost and confused. The recommendations and expertise on this site are amazing. You can ask anything.
Praying for you
Lisa

This Information Is Not Intended Nor Implied To Be A Substitute For Professional Medical Advice. You Should Always Seek The Advice Of Your Physician Or Other Qualified Health Care Provider

Re: ANGRY,CONFUSED AND VERY SAD!!!

Hello everyone,

First of all,sorry that I haven't been keeping you all up to date on my wife's (Gingers)health.Thanks to the generousity of some of the faculty and staff from work.They gave us a airfare round trip,hotel accommodations and limousine service to Las Vegas.And we got married on October 8th.I must say it was a very emotional ceremony.She has started her Chemotherapy and she seems to be doing well with it.The only thing that I've notice is that she gets very weak for a few days.She is getting her abdominal fluids drained about every two weeks,an average of 4 to 6 liters of fluid.We are still getting lots of help and support from the school community.The director of the community service and I bought about 3 hundred of the bracelets and passed them out through out the faculty and staff and students.It is great to see people wearing this bracelets in support for Ginger. She is being well taken care of through the day by her daughter,that moved in with us.Ginger is going on my health insurance policy starting in December.This difficult times are really taking a toll on me also.I am now on stress medication and medication for my migraine headaches.It has been very difficult for me to be at work.Because I have to talk about it 10 to 15 times a day.People just have so much love and care for her,it's amazing! God Bless You All. And thanks for the support and prayers.

Re: ANGRY,CONFUSED AND VERY SAD!!!

greynosa....How nice it is to hear from you, we missed your updates. 
The wedding must have been a touching and emotional event something so deserving to you and your sweet Ginger.  Congratulations on your marriage.   
I applaud the school community for their generosity and kindness shown; what an admirable group of people you are surrounded with.  How wonderful it is to know that an additional three hundred people are wearing our bracelets and that they are now connected with the global Cholangiocarcinoma community at large.
Ginger’s daughter made a wise decision by living in your home and thereby lending much needed support to you and her Mom.
And, please take care of yourself too. Given that you also are undergoing enormous stress you must make sure to keep your own doctor appointments, get enough sleep, exercise, eat healthy foods, and keep your normal routine as much as you can. It is important not to feel guilty or selfish when you ask for help or take time for yourself. By taking care of yourself, you will be better able to take care of your loved one. And, continue to reach out to those wanting to help - this is the time to do so.
Know that my heart is with you and that a tidal wave of good wishes is heading your way.

Hugs,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: ANGRY,CONFUSED AND VERY SAD!!!

Dear Greynosa, I would like to add my CONGRATULATIONS on your marriage and what a beautiful thing your faculty did for the two of you. It really shows the love they all feel for you both. I love the idea of  passing out 300 bracelets and I doubt we ever had so many given out at one place. It is a great way to get CC out there as people will always ask what the bracelet is for. Thank you for doing that. I am so glad that Ginger's daughter has moved in, you sound like such a loving family. You mentioned talking about everything so much, I have a suggestion to reduce your stress. I made a list of friends and family who were constantly calling or asking and I was so mentally exhausted of repeating. Every night I emailed an update about Teddy to all with one email. I explained that I just couldn't keep talking about it and while we appreciated the concern I also asked that only close family make calls. It was great, except for the kids calls came only when visitors wanted to come as everyone was getting their nightly updates.Really eased up the stress. Sending love and good wishes for the best and please do keep us updated! Be Strong.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: ANGRY,CONFUSED AND VERY SAD!!!

Dear Greynosa,
I was happy to read your post yesterday, we have a mutual friend, Annie, she is my sister-in-law and a teacher at the school where you work. I was talking to her yesterday about you and Ginger and come home to find your post...small world! She was going to track you down at work today and ask you to call us.  We went to USC on Friday for a second opinion and was very happy with the Drs. there(we are having trt at UCLA now). Dr Selby gave us a ray of hope regarding surgery for our son Jeff, we know its a long shot, but any shot is good. Please feel free to call us (310)370-1317, know that we are praying for you and Ginger and for all the wonderful people on this site.  Everyone here is such a blessing to our family. Take care and hope to here from you soon.

Nancy

Re: ANGRY,CONFUSED AND VERY SAD!!!

Greynosa and Ginger, congrats on your wedding, I'm sure it was filled with love and emotions. I am sorry this is so hard on both of you, the caregiver job is tough, sometimes I think it is easier to be the patient. Sending prayers
Lisa

This Information Is Not Intended Nor Implied To Be A Substitute For Professional Medical Advice. You Should Always Seek The Advice Of Your Physician Or Other Qualified Health Care Provider